Traveling with a Child who is Medically Complex

child on an airplane

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My daughter Alexis is a medically complex child who relies on several medications and different types of bulky medical equipment. Everyone knows that traveling with kids in general is tough, but how do I manage it with all the extra equipment and extra worries?

Preparing

It begins with preparation. We start by identifying our itinerary: where we are going, where we are staying, when we are going to different cities, who we are seeing.

Because of Alexis’ medical needs, we always look up the location of the local Children’s Hospital where we’ll be visiting. Thankfully we haven’t had to use this information, but it’s a relief to know where it is in case of emergencies.

We put all of the travel papers (itinerary and ticket info as well as doctor’s notes, medical information, etc) into one folder that stays in the carry-on. I am almost ready to start using Tripit, an online tool that organizes travel information in an easy to access manner, but for now I continue with my paper method.

Packing

Alexis meets Tigger at DisneyI just mentioned one item that we carry-on (our travel document folder), but we also carry-on all items that we would need to survive for 24 hours. Luggage gets lost (three bags lost per 1000 passengers) and flights get delayed. We need to be ready to live off of what we have with us.

Alexis has a G-tube so we pack G-tube supplies and food for 24 hours. After that, we’d have to contact the local office of her G-tube supply company and explain the situation (another good number to keep with you in your travel documents).

We also pack her CPAP which she needs nightly to sleep. These items are priority one for the carry-on.

To keep packing organized and to make sure we leave the house with all of the items we need for the trip, I prepare a detailed checklist.

Why a checklist? In The Checklist Manifesto: How to Get Things Right, Atul Gawande argues that no matter how expert you may be, well-designed check lists can improve outcomes (even for Gawande’s own surgical team). The best-known use of checklists is by airplane pilots. And if it’s good enough for pilots, surgeons and builders, then it’s got to be good enough for me!

I save our checklist in Word, edit it for the current trip, then print it. It stays on the kitchen counter to be checked off by both adults who pack the suitcases.

Here is an example of our checklist—it’s simple!

But even with careful packing, we have ended up in the heavy bag category. For the past couple of trips at the airport, I’ve had to explain that our bags going on the trip are heavy because of stock supplies of Alexis’ G-tube food. I am now aware that we need to carry a doctor’s note with Alexis’ luggage to explain why her luggage is heavy.

Transportation

Alexis & Jessica meet Eeyore at DisneyAlexis sits in a car seat on the plane for extra safety and security. When we travel around the airport, we use the Go-Go Babyz Kidz Travelmate so we can turn her car seat into a stroller. This allows us to maneuver around very quickly and it means Alexis is comfortable on the airplane and she has her familiar car seat when we reach our destination. We usually rent a car at our final destination, so we have always brought Alexis’ own car seat.

During our last trip, we went to Disney World and a friend recommended renting a double stroller. It was truly a lifesaver. Alexis could ride comfortably and her sister Jessica could hop in and out when we had long distances to cover quickly. Kingdom Strollers rents strollers in Orlando for families visiting the theme parks there.

For our upcoming trip, we are doing sight-seeing in Chicago and we found a service, Baby’s Away, that covers many parts of the country. This company delivers strollers or other equipment to the requested accommodations. It’s really helpful to use the equipment where you need it and avoid having to schlep it through the airport and connecting flights.

Plan for the Unexpected, but Enjoy Yourself Too!

We do worry. We worry that we won’t be able to address Alexis’ needs. We worry that we might forget something. We worry that Alexis will be uncomfortable or sick. We worry as any parents would when they travel.

But in the end, we have FUN. Our families live far away, so we must travel to see them. We create memorable family moments by working hard in preparation, packing and planning for the unexpected.

In the end, if we can offer Alexis the world, we will try to accomplish that.

Catherine's family on vacation at Disney

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